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If you were diagnosed with T1D as an adult, for how long did you notice symptoms before getting a T1D diagnosis?
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I felt no symptoms. I was diagnosed because of high BG during my yearly checkup.
After taking type 2 meds for 2 months with no effects on my BG it was decided to be type 1.
That’s almost EXACTLY what happened to me. I had zero symptoms; only a slightly higher BG at my annual exam. Then, a positive GTT once I got in to see an endocrinologist.
I put 1 week-1 month although I started feeling a little tired maybe 6 weeks prior to diagnosis. I was also a full time student working 2 part time jobs so I didn’t think anything of it. I first started to actually be aware that things were off about 3 weeks before diagnosis.
My primary insisted I was non-compliant with my diet and exercise and therefore I was to blame for my higher numbers and A1C. He told me that I could not be t1 bc I was an adult.
I hope you changed doctors!
It was probably around 3 months. I knew I had symptoms, but I had no risk factors for Type 2. At the time, I didn’t know people my age could get T1, so I ignored it. It was when I had to get up to to the bathroom and drink a glass of water about every hour all night that I finally went to the doctor. I was getting really tired out at that point. Then it was the same old story, Type 2 treatment which didn’t work, until I got into an endo.
I noticed I was extra thirsty about 3 months before diagnosis, but it was an unusually hot dry summer. It wasn’t until September when it was cooler and I was still drinking a lot, I knew something was wrong. That coupled with the fact that I eating an enormous amount of food but was still losing led me to the dr. At 51 years of age, I had to argue with the dr that my symptoms were Type 1, not Type 2, to get the proper tests, diagnosis and associated insurance benefits.
I answered 1 – 3 months but I honestly don’t really remember, it was long ago (1975); definitely not more than 3 months, but could have been a little less than a month.
July, 1977: I was diagnosed within one week. The changes I experienced were significant. Took all of my energy to walk up a flight of stairs. Very thirsty, and drinking a gallon of water daily. I knew immediately that something was not right. Got a doctor’s appointment right away and was diagnosed. However, took pills for “Adult onset Diabetes” for a few days. Then, was put on insulin (Regular and NPH), which was my regimen for the next 21 years, until I got an insulin pump.
I was in college and had recently studied abroad, so we thought the exhaustion and weight loss was due to these factors. I was diagnosed because I went for an annual exam, and the doctor took a urine test. My blood sugar was over 800, and at that point, I could barely walk on my own, and spent a week in the hospital.
Same. I ignored it until I couldn’t anymore. They thought I was anorexic. Lost 10 lbs with a short period and was 110 at 5’6”. My primary tried pills. Nothing. I then looked for an Endo on my own. Got turned down by 4 before I found one taking new patients. My primary said: I can get you shots. Well why didn’t you? Why did it take ME telling YOU I needed insulin before you said that? He’s not my doctor anymore. My Endo said you don’t have to starve yourself anymore. We will get this fixed. And he did.
For several months (6?) everyone complimented me on how wonderful it was I was losing weight. I was also thirsty and going to the bathroom often. I had been told a year before that my blood sugar was “a little high and I should lose weight. ” When I finally got an appointment, I was told I had T2 and that’s what happens as one gets older and puts on weight. My blood sugar at my first CDE appointment was 406. I was started on Metformin and told to eat less. A month later, at a T2 support group meeting, after listening to the others brag about how they kept their numbers down by ordering the small fries and the small sundae, I stood up and spoke out. Because I caused a scene, I got blood work sent to Mayo Clinic who looked at antibody and C-peptide levels and I was rediagnosed LADA, told none of it was my fault, and prescribed insulin.
One would think that would be the end. But every few years I have to correct some doctor’s changing my records to read Type 2 (and listen as they condescendingly tell me that there are two kinds: the kind little kids get…and it’s obvious I am not a little kid) and I have to convince them not to cancel or drastically reduce my insulin prescription. And despite the new data showing adults are over half of those diagnosed T1, the situation is getting worse.
Oh yeah, I’ll share my x story below, but the next time you have to fight for your T1D status, inform them that 40% of new T1D Dx’s are adults. “It ain’t all that rare”
I’m also one who was diagnosed T2 then T1 as an adult.
I had no symptoms
When diagnosed with T-1D
I received a diagnosis at age 15, so not quite an adult and I answered accordingly. But I had symptoms I can attribute to T1D for at least 8 months, including weight loss, lethargy, headaches, stomach issues, and NLD.
I marked other because it was an issue for longer than a year, years! My first Endo retired in the middle of things being discussed. My next Endo moved to another state a year after taking me on as a patient. The current Endo did a blood test right away and I showed markers positive for T1D. This is the Reader’s digest version. It was a battle. It has always been a battle. Insurance is also a battle. Going to be going on Medicare soon, another battle about to begin!
I’ve been on Medicare for about 5 years – DX as T1 7 years before. The Medicare coverage hasn’t been an issue – finding an Endo in the Portland, Oregon has been the fight.
So sorry for you and many others !!! See my remarks so different than yours..
I was 30 years old, ballet dancer with a “day job”. I had a bout of strep throat (thank goodness for the day job – I have health coverage). After the strep was gone – at least I cold swallow – I still felt like crap. I was dropping weight (my working weight was 110 lbs, I’m 5’6″) and was down to 100 lbs. A fellow ballet company dancer mentioned me to her dad – an MD, he said I should got to a doctor, and if I couldn’t gt into one she should bring to their home. Anyway, cuz I was 30 I was Dx’d with T2. Got the same lecture, watch my weight, eat less, exercise more etc. My head wasn’t very clear so I didn’t challenge any of those directions. I also didn’t know anyone with any type of D, so I didn’t know to challenge the Dx.
Then a neighbor found me in a coma from DKA. Once again, my day job helped me out. It was with a large city Fire Dept. They knew about my Dx wit T2 and when the neighbor called to say I wasn’t coming in to work that day – because she couldn’t get me to wake up – they reacted and dispatched EMS from HQ. I got the correct Dx from an attending Endo in the Emergency Dept.
Even after the correct Dx, while in ICU I got scolded during rounds for “not taking care of myself”, and allowing the DKA to happen. There was that assumption that I had T1D since childhood. The Endo who Dx’d me corrected the residents during rounds and that’s where I learned that adult D of T1D isn’t all that rare.
OMG! What an experience you had! I’m So glad you’re on the right road!
I had symptoms for about 25 years, but didn’t want to admit it. Went on a very “low carb diet”. I have 2 uncles, 1 on each side, that died from the disease, one at 12, and the other at 42. I was sure that I was going to beat it! I never felt good and my enzymes were all out of wack! Don’t recommend it for anyone!
I was 39 and diagnosed as type 2 as well and initially was put on glyburide to make my pancreas work better. Obviously, this did not work and I continued to feel terrible with typical symptoms of thirst, weight loss, vaginal yeast infection that would not clear up, fatigue. A nurse friend referred me to UCSD endocrinology and they put me on insulin right away and here I am 30 years later doing well.
I was 18 when diagnosed. I kept telling my medical parents that I was really thirsty all the time. It took a month before my dad (a doctor) had me take a blood test. My BG was around 450 a couple of hours after eating a sandwich for lunch.
WOW!!
I had no symptoms. I was originally diagnosed as type 2 at age 57 but within less than 2 years I was diagnosed as type 1. Sometimes I was tired but I was also a competitive runner and trained more than 2000 miles a year and thought that was related to some strenuous workouts like fast repeated miles along with 20+ mile runs.
I was in the service at the time, 22 years old. Ignored the extreme thirst and very frequent unration for an extended period while in an overseas posting. Diagnosed via diabetic coma upon return to US.
I had the classic thirst after being discharged from hospital after a car accident. Within a month I was diagnosed as T1D
In 2013, at age 55, I began drinking lots of water and noticed my long distance vision was blurry. Then one day I felt really lousy. Luckily, we had a meter and strips from my DH’s T2 pre-diabetes days. We checked and checked again, in the 400’s. Off to my GP then the ER. In the end, I feel very fortunate to have spent just two weeks feeling off, then being Dx’d with LADA. I thank my DH, with all the research he did, we were aware of the possibilities.
After a five- hour fasting test, t was diagnosed as Type -my 40th birthday present. I weighed 145lbs and was put on. Draconian diet to lose25 lbs fast. I maintained the weight loss and a milder version of the diet like a new religion for five years. After my annual A1C was over 12, the doctor called me and said we had to talk. I started insulin. When the next doctor told me he had no idea what to do with me, his nurse overheard and told me about an endocrinologist in Portland, 85 miles away, and so 3-4 times a year — road trip!!! He keeps me alive. I’m 75, weigh 133, work out four days a week, use weights and do floor exercises, and swim.
To kflying — try OHSU in Portland, Oregon. My doctor is Andrew Ahman. He has been a life saver.
Primate dx me as type 2 but I knew better having had 3 brothers with type 1 and I was an RN. I insisted on insulin this was 1978. No endo til I was in DKA 5 yrs later with flu
I had 15 months of undiagnosed T1D, during which I experienced extraordinary leg cramps, both nocturnal (would persist 5 minutes, legs so tight I could see every bone and vein, and incredibly painful) and exercise-induced (so severe that it would take 10 minutes before I could stand, 30 minutes before I could walk, two weeks before I could exercise again). I think it was my bad luck that this started shortly after a physical exam, at which my blood and urine tests were normal. My internist expressed pessimism about ever knowing the cause of the cramps, as many such cases never lead to diagnoses. But in the last two months of this period, I was trying to lose weight, and noticed it was way too easy (lost 30 pounds), then started experience drink-pee, peripheral edema, and other symptoms. I self-diagnosed as diabetic, but my internist didn’t believe that was possible. He did agree to test for it, though. My A1c was 13.7. I have a new internist now. Unfortunately, I also have some peripheral neuropathy from this period. Still, this is a lucky time to be alive if you happen to have T1D, and mine is well controlled with a pump and CGM. I was diagnosed at 72, BTW. I’m 78 now. — Rudy
Had usual symptoms for about 3 months at age 40, including losing about 9 pounds. Due to no history and being a fit runner, was diagnosed as type 2. Later an endo diagnosed me as LADA.
I don’t know how long it was because I didn’t feel “symptoms”. I knew there was something wrong with me, and just thought I was depressed. First diagnosed as Type II, but soon needed all insulin, then C-peptide showed I produced not even a drop of insulin.
1962. Couldn’t drink enough water. Tremendous thirst. About four days of that, and my dad, a pediatrician and Type 1, couldn’t deny it any longer and took me to the clinic for a test. Diagnosed in an hour, went on insulin, went home with parents after two hours. Zip zop. Life turns on a dime.
Less than a month of noticeable thirst, excessive urination, and blurry vision. In retrospect, I was losing weight for some time before that, but wasn’t concerned about that.
I was diagnosed at age 67. My PCP had me do fasting blood work for a couple of years prior to diagnosis. It always came back a little high but she insisted on just keeping an eye on it. Now that I look back, I had periods of what I now know are symptoms of high BG for maybe a year. After a bout with the stomach flu (or something) I became very thirsty, had blurry vision and lost 20 pounds in 2 weeks. Went to the ER and they diagnosed me as type 2 and sent me home with pills. Things got progressively worse over the next 3 months and numerous ER visits, PCP visits and pills. I was finally able to get in to see an Endocrinologist who immediately diagnosed me with LADA and put me on insulin. Turns out a CPeptide test that was done at my initial ER visit showed almost no insulin production and nobody caught it! I’m now on the DexCom and CIQ and am doing really well. So disappointed in the lack of knowledge the hospital staff had.
I was dignosed as a child and never noticed symptoms. My GP was checking to see if I had recovered from Hepatitis A and sugar was detected in my urine. Next day Diabetic clinic and the day after hospital, but another year before I was on insulin
Was In nursing school at 53 years of age. Notice BS was low one time but was hungry. When I graduated got a new primary doctor. BS was 130. He tried to put me on metformin as a type 2. I refused. Went to Endo she said type 2. Read a lot of books then article about LADA. Second Endo did a c-peptide and gave me correct diagnosis. Took 2 years. Very frustrating.
I did not realize what I was experiencing was symptoms of something wrong. Looking back, it’s obvious I was more thirsty, urinating more, going below a healthy weight (had consistently been losing weight over two years, so I second-guessed), and dry skin. I went in for a normal physical and they found my A1C was above 13!
Other – I had no symptoms, was diagnosed due to a health screening as part of an assignment in pharmacy school. A1c was 7.2% and had a prolonged (~2 year) honeymoon period with very little insulin requirements
It was over a 3month period. More thirsty, rapidly loosing weight, vision very blurry. Went to internist who did not even want to do A12 as I had always been slim with no immediate family history (although grandfathers sister was type 1). A1c 11.5. Said I must be type 2 due to age, 36.
Kept getting sicker. Got in to see an endocrinologist c peptide confirmed type 1
Given that I was 50, My Primary Care Dr. assumed I was type 2, even though I was not overweight. I traveled to CA and was tested by Dr. Anne Peters and blood tests confirmed LADA.
I was dx at 56 with the classic symptoms, but I didn’t recognize them as diabetes. After several months I made an appointment with my Primary, but she was on vacation for several weeks and the appointment was three weeks out. When she got back, she sent me to get labs because of my symptoms. I had blood drawn on Friday afternoon and got a call from her on Saturday morning to go directly to the ER. Admitted in DKA and in the ICU for several days. Initially dx T2 because of age and weight, but thankfully, the hospital doctor sent out for the autoantibody tests (because Hashimotos dx at the same time) and my GAD was 1800, so T1. Not glad I was hospitalized, but glad the real dx came quickly and not years of T2 dx.
I was in the the throes of an eating disorder and was pretty out of touch to what I should have been feeling like. The telltale sign was my vision deteriorating and that is ultimately what prompted me to see a doc.
I was misdiagnosed as a Type 2 22 years ago. The doctor I’ve been seeing the last 8 years changed my diagnosis after I had been seeing him for three years.
I will be 90 years OLD in a few days !! [maybe]…. When I was 21 years old, my Mom noticed I was drinking water and peeing a lot. Also I was loosing weight, very tired etc.. So she sent me to her GP for checkup.. He took blood sample to send to a lab [just for kicks I guess} and gave a pamphlet and list of insulin and syringe and needle to practice on an orange that day and to stick my self the next morning !!!! What the HELL is going on with these Doctors I read about above ??? I don’t have any so called ‘D’ problems.. I’m just OLD !!
I was 53 when I was diagnosed with type 2 by my GP. He kept telling me to eat whole wheat bread and whole wheat pasta, but I have Celiac disease and I kept reminding him but he kept giving me these crazy pamphlets with diets I could not follow.. A week after he diagnosed me with type 2 I got a concussion so the blurry vision and anything I was experiencing was written off as symptoms of my concussion. Within 2 months I lost 30 pounds so now I’m just about 100 pounds. The Doctor yelled at me and told me to eat and not diet. I was not dieting. I had a Facetime with my older sister and she was shocked at my weight and told me to make an appt. with an Endo. ( my older brother had type 1). As soon as the Endo talked to me about my autoimmune diseases and my families he knew I had type one, the tests confirmed it.
I was diagnosed when a routine blood test came in with an A1c of 8.8. I had no symptoms and for 4 months was treated as a Type 2 by my internist. On my own I found an endocrinologist who tested me for GAD antibodies and C-peptides, giving me a LADA diagnosis.
I was not aware of any symptoms, and I had never heard of diabetes before my diagnosis. I had a urinary tract infection and they routinely checked my urine, which showed a lot of sugar. So they ran a glucose tolerance test to verify whether I had diabetes. They told me the result a month later. As I said, I was not aware of any symptoms over the intervening Christmas break and had never heard of the condition.
I got a virus then three weeks later was in DKA and was never diabetic before. My last glucose was at my yearly physical a month before I had the virus.
I never experienced diabetes symptoms prior to my diagnosis. I had a severe yeast infection and I went to my GYN who checked my urine. He ordered a 2 hr post prandial lab test. I chose an Endo and he ran labs which included a C-Peptide which showed I no longer produced Insulin. This happened a few years after I survived Thyroid Storm.
Oh boy!!! Reading so many accounts of being misdiagnosed as a T2 and almost dying from DKA or extended years of misguided and miscalculated diabetes treatment on the wrong meds is a real eye opener for the standardized medical community. We have made some headway to get LADA recognized, but it is still fairly unknown territory for many out of touch medical providers.
I sincerely hope T1D Exchange data collection on this topic can be fed into significant published research to wake up, shake up, and overhaul the entire medical community by teaching and training medical professionals to recognize and suspect LADA, as well as other forms of diabetes that affect adults and children of all ages at all stages in life.
For example, T1D does not just affect children, and T2D does not just affect adults. Overweight and obese children & teens are being diagnosed with pre-diabetes and T2 in greater numbers than kids being diagnosed with T1D. Adults whose immune systems have been altered by COVID are suffering insulin deficiency leading to hyperglycemia, hence LADA. Time for the AMA to mandate up to date diabetes education for all doctors.
Probably about two months. It started with a yeast infection on my men’s bits that I was far too embarrassed to go to the doctor with or tell anyone about. I felt fine otherwise despite the fact I was constantly drinking and urinating, and didn’t think too much of it and got on with my busy life. (Now with a deeper knowledge of mental health I believe I was probably dissociating away the fatigue and weakness.)
My eyesight got blurry so I went to my optometrist who clearly didn’t believe me when I said it had become blurry in a matter of weeks. He asked if I had diabetes, and I said no, and then he insisted that it must have happened over many months and wrote me a prescription for stronger glasses.
About a week later I got a yeast infection on my tongue and everything started tasting like metal, so I went to the doctor, who immediately sent me to the hospital and told me I probably had T1D, which was soon confirmed.
I have been hypoglycemic my whole life. After menopause it stopped and my sugars started running high. My A1C which my primary would run with my regular blood work started slowly creeping up. I had no real symptoms. No excessive thirst or urination. I raised 2 T1d boys and my brother has T1d so I was very familiar with the disease. I would run my blood sugars off and on over the years and it would gradually climb. I used diet and exercise for years, until I started losing too much weight and couldn’t literally eat a pea with out going high. So from the age of 45 to 55 my doctor treated me as Type 2, at the age of 57 I went to an endocrinologist and I had the antibodies test with the diagnoses of Type 1 LADA.
I feel lucky after reading the comments. Despite an A1C over 14 at diagnosis (T2), I never ended up in the hospital. And I only went 4 months before the testing and correct diagnosis of T1.
The symptom was yeast infections, which I didn’t think of as a symptom of diabetes until after I started taking insulin and noticed I had no more problems with yeast. I have Latent Autoimmune Diabetes of Adulthood – LADA. I had had gestational diabetes 7 years earlier, and yeast infections for more years before that. My PCP didn’t check my sugars those years. I got a new PCP.
I was 16 and had symptoms 3 months before being hospitalized with BG 1014